FAQ – Epilepsy and Developmental Disabilities

The following answers have been written by The Epilepsy Foundation of Metropolitan New York staff and members of its professional advisory board.

Is epilepsy common in children who have developmental disabilities?

Epilepsy is seen in children who have no other problems; however, epilepsy is common in children who have developmental disabilities. Approximately 30% of children with epilepsy have other developmental disabilities. In one study, children with mental retardation and cerebral palsy had a 35% chance of developing epilepsy, children with mental retardation alone had an 8% chance, and children with a brain injury occurring after birth had s 75% chance. In general, the risk of a child with a developmental disability experiencing an unprovoked seizure by age 5 is about 4 times greater than in the general population.

Will antiepileptic medications control the seizures in my developmentally disabled child?

There is a 40% chance that you child will attain seizure freedom on medications. The probability is better for children with mental retardation only, as compared with children who have both mental retardation and cerebral palsy. The chances of seizure freedom are lowest for those children with a head injury after birth.

What are some things that can be a risk for my child to begin having seizures?

Some of the risk factors for having seizures that we have seen in children with developmental disabilities are cerebral palsy, mental retardation, having had neonatal seizures (seizures at birth or within the first 4 weeks of life), having had febrile seizures, autism and prematurity. All of these things have some increased risk for your child to begin having seizures; however, much of the increased risk is limited to selected groups who have major disabilities. If neither MR nor CP is present the risk is not substantially different than that of the general population.

What kinds of seizures do children with developmental disabilities have?

There are many different types of seizures. In one study that looked at different types of seizures in children with developmental disabilities the most common seizure type was generalized (tonic-clonic or grand mal). Some of the children also had partial seizures, either simple partial or complex partial. There was also a group of children who had more than one type of seizure.

My child has very long seizures lasting over ten minutes, is this common? What Should I do when this happens?

Studies have shown that children with neurological disabilities and very young children are at risk for having prolonged seizures. If your child has long seizures a complete evaluation is needed to ascertain that he is on the best medication or combination of medications for his seizure type. There are other medications that can be given safely at home if a seizure lasts longer than usual. Finally, if a seizure does not stop within a specified amount of time you should call 911 for assistance. Your child’s healthcare provider can discuss these issues with you.

I have a child with development disabilities and epilepsy. He has not had a seizure for several years and now my doctor wants to take him off of his antiepileptic medication. I am afraid that he will have a seizure. What should we do?

Most healthcare providers will give a child or adolescent a chance of being taken off of medication if they have been seizure free on medication for 2 years. Children with disabilities have been taken off of antiepileptic drugs (AEDs) with success. One study that looked at discontinuing drugs showed that about 50% of children with disabilities who were seizure free on medication were able to remain off of medication without seizures.

My child has developmental disabilities and epilepsy. I think that he might be depressed. What can you tell me about this?

Children with these problems do sometimes become depressed. One study in adults has shown the prevalence of depression to be three times higher in epilepsy patients than the general population. It is important that your child have a thorough evaluation by a qualified physician to determine whether treatment is needed. Many of the symptoms overlap between developmental problems, epilepsy and psychiatry. There are treatments that can be used in this population such as medications, psychotherapy and others, but the initial step is an assessment by an epileptologist and psychiatrist.

What are some reasonable goals in terms of my child’s epilepsy (he also has developmental disabilities).

Regardless of developmental disabilities Therapeutic goals for your child are complete seizure control and no adverse effects from medication. Reasonable goals may be “best” control of seizures, limited number of medications AEDs, no injuries from seizures and an optimal quality of life taking into account his disabilities. If you feel that your child has not reached his goals a complete evaluation by an epileptologist may be helpful.

What kinds of seizures do children with developmental disabilities have?

The vagal nerve stimulator and the ketogenic diet have been used with some success in children who have epilepsy and developmental disabilities. The vagal nerve stimulator is a device that is implanted into the child’s neck and shoulder area, in the operating room. The generator (in the shoulder) sends a preset electrical impulse to the vagal nerve (in the neck) which in turn stimulates the brain. This device is used to control seizures in conjunction with antiepileptic medication. The ketogenic diet is a medically prescribed diet that consists of high fat and very minimal carbohydrates and low protein. If you think that either of these options may be useful in your situation you should contact a healthcare provider in a comprehensive epilepsy center who has experience with both of these treatments and can discuss them with you.